One of those years

[BC1969]

Hey Guys/Gals Mike here, been having one of them kinda years were you feel like a lost sheep.
My wife has been very ill now going on 13 years, just yesterday finally found out whats wrong with her, to make a long story short 10 years or so ago after she had been being in increasing pain for a few years our doctor started doing alot of tests on her, from her symptoms we thought she may be developing MS, we asked our doctor to test for that and he said he would in the next round of blood work, well 10 years later and you know my wife is nearly crippled now, she started getting numb down her intire left side, so 2 days ago I took her to the E.R. thinking she may have had a stroke.
Well after a flurry of tests including a MRI of her brain, their chief neurologist came to us with test results and told us matter of factly that my wife is suffering from advanced stage MS, that has been affecting her for more than ten years, I guess they can tell that by the amount/size of the lesions that are on her brain.
So yesterday afternoon my wife and I went to see our family doctor to demand to see the tests results from all those years ago when he checked her for MS, you know how it is with doctors and tests, you normally do not get a cal about a test if nothing is wrong, which we never got a call, but yesterday after demanding to see the test results, he told us that he NEVER did the test...yeah welll we were shocked that he told us that even though at that time we had what many considered excellent health insurance, he told us back in them days that the insurance company would not pay for the test, so instead of asking if we would pay for it ourselves, he just never did the test...
Well I tried to make it short, but you know I'm sitting here weeping over the fact that had we known this 10 years ago that she had the beginnings of a disease that would have eventually cripple her and it has, we would have done the things in life that we would have wanted to do sooner when she could physically do them, now that time has come and passed because some cheap insurance company could make a better profit..

SO them worries are why I left the site earlier, that and certain cliques, I am to patriotic and passionate about my country, so aslong as I can keep myself out of the political posts I'll be ok lol.

Mike

PS I see 2 people swiped my avatar, that ok I can share and its not mine to begin with, found it on Google.

 

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[Treasure_Hunter]

Mike glad you returned, but really sorry to hear about your wife's condition.

Hope you continue to post here if for no other reason than an outlet.....

Sent from my new Galaxy Note3
now Free

 

[Muddyhandz]

Capitalism knows no love, compassion, sympathy, or morals.
All it knows is profit for the shareholders.
Sorry this had to happen.
I wish all the best to your family.
Cheers,
Dave.

 

[pat-tekker-cat]

I am so sorry to be reading this news. Ya'll will be in my prayers and best wishes.

Please do stay, and as TH says, keep posting as you feel you can. Try if possible, to reach out to the good folks in your community, that may can be of assistance. If your wife is not already on Soc Serc Disability, please get that application started now, today, right away.
Stay strong, pm me any time you like, and hang in there!

 

[Oldbuttplate]

I can feel your frustration, pain that last a long time and a Doctor that can't help or tell you what it's from can be the most frustrating thing one can run in to. Been there done that! I was lucky and found a Doctor that sent me to a specialist. Second opinion is the way to go.
My prayers for you and your wife.

 

[BC1969]

Thanks for the well wishes, we did sorta get a second opinion all those years ago, he first diagnosed her with fibromyalgia, but she kept getting worse, so he sent her to a rheumatologist, and he kept saying it was fibromyalgia as well, for years, but as time went on it became obvious they were both wrong, see 4 years ago we lost our health coverage, and them same two doctors who all those years acted like your best friend, suddenly did Not want anything to do with her after the loss of insurance.
Her rheumatologist even sent her a letter saying he would have to decide to keep her as a patient after we no longer had insurance.
That being said, and I do not really believe in suing somebody, but by not doing that test years ago and basically lying about it has robbed my wife of 10 years of her life.
Had we known back then, that she would never get better and that she would eventually be crippled, we would have done things we wanted to do, like ride roller coasters, gone hiking/climbing tons of things, nowadays a half hour in a car makes her cry from the pain.
So I guess it's time to get a lawyer.
Sorry for ranting, I couldn't possibly be more upset/mad than I am.

Mike

 

[Msbeepbeep]

Our prayers for you, your wife and family. I wonder how these so called doctors can sleep at night with the way they treat people sometimes. Hang in there and make it count!

 

[Rusted_Iron]

Really sorry to hear about what happened, Mike. Definitely a raw deal.
Will be praying & thinking of you both.

 

[BC1969]

Yeah we talked about doing just that, I really do not like the idea of suing anybody for anything, but my wife basically got robbed of the last 10 years of her life, and has had to deal with unnecessary pain and suffering being treated with meds that were not helping her in the least bit for her condition.
Thanks again for the well wishes.

Mike

 

[g-olden years]

Much love & gentle hugs to you and your wife. Clearly you both have the depth of character, commitment, and love than many lack. Andi

 

[Plumbata]

Damn man that is terrible. Sounds like a malpractice lawyer might be able to help you guys out. There are advanced treatments and therapies out there not covered by insurance that the winnings could be applied toward. My gal has MS too so I can sympathize, though it was caught within several years. She went through 2 or 3 different daily/semi-daily injected MS medications for several years and not only were they ineffective, but the MS attacks and lesions got worse. Then as a last resort she was switched to a once daily oral pill called Gilenya (0.56mg Fingolimod HCl), and the results were astounding. She hasn't had a single attack since, and the recent MRIs show that a number of lesions were actually getting smaller and healing! It is a "last resort" drug because it is more expensive to the insurance companies than the injected meds and wont be used if the latter show results, and there is a 1/200 chance of a severe side effect so the first dose requires inpatient medical supervision.

Without insurance it would cost around 40,000.00 a year, which is insanely stupid. It is indeed a complex and difficult-to-synthesize drug, but that level of price-gouging is absolutely criminal. Among many things, I am good at "finding" materials, so I did some digging and located a legit source (several actually) of Fingolimod HCl for roughly 500.00 a gram.

Here's the math:

365 days X 0.56mg = 204.4 milligrams of medicine used per year. Drug companies charge 40,000.00 dollars for 1/5th of a gram. I can get the same amount for about 100.00

There is no way in hell that the pretty packaging, gelcaps, and inactive fillers are worth 39,900.00 bucks a year. It is worse than criminal how they rob the uninsured to such a degree. Sure, drug companies need to make a profit and cover overhead, but the drug already existed for years as a Leukemia treatment so making the "billions spent in R&D" argument won't fly here. A 40,000% profit margin; profits squeezed from the otherwise hopeless, terrified sufferers is absolutely and utterly mind-numbingly criminal. The whole pharmaceutical and medical industry is so rife with profit-motivated criminality and unsustainable idiocy that I fully expect Obamacare (and indeed all related gov't and taxpayer subsidized safety-nets) to implode. It is insane. I can get kilogram quantities of almost any 1st, 2nd, or 3rd generation antiobiotics for less than 100 bucks (and have already gotten some for my "prepper" stockpile), and even my father's anti-rejection meds (he had a heart transplant 13 years ago) for prices as low comparable to drug company prices to be fully in-line with the gouging going on with Fingolimod. If most Americans weren't clueless brainwashed sheep they'd realize what a farce the whole system is and obtain what they need themselves for a small fraction of a penny on the dollar. Anyway, I got the assay reports back and the Fingolimod tests at 99.77% purity, so is above and beyond the quality standards set for medicinal grade material. Ya better believe that I'll be stashing away a 5 or 10 year supply for my gal just in case the economy implodes and her existing healthcare ceases. In the unlikely though possible event that the dollar is truly destroyed in the near future and the country is plunged into chaos, it will be nice having a bunch of life-saving drugs at my disposal. The silly people hoarding gold and silver will just end up giving it all to me in order get what's needed to save their life. A freezer full of drugs might as well be a room full of gold in such a scenario.

Anyway, I am sorry to hear about the late diagnosis, but there is still hope! I'd press the need to try out Fingolimod before going through potentially fruitless years of using injectable MS meds, but by all means do your own research and figure out what is best for the woman you love. If Gilenya stopped the progression then reversed some of the damage in my gal it could do the same for yours. Best wishes, and stay strong for her!

 

[Number9]

"An extract from the plant Cannabis sativa (trade name Sativex) was approved in Germany in May 2011 for patients who have moderate to severe spastic paralysis and muscle spasms due to multiple sclerosis."


I believe in the future the truth will be known that our government over the last 75 years has restricted this plant that could have already been a great aid or cure for many disease. The restrictions has made it very difficult for research labs in our country to test the benefits of cannabis.

Go to YouTube... enter "Montel Williams Cannabis"... and see what someone with MS says.

 

[Plumbata]

Yup, the benefits of cannabis in the mitigation of negative symptoms of MS are quite real, but using the material legally is a definite issue. I've also read that pregnancy, perhaps due to the influence of the fetus' immune system, will put "on hold" the progression of the disease. It is a terrible burden not deserved by any sufferer but the injustice of it all certainly doesn't make it go away. All we can do is keep our eyes open for potential treatments, and most importantly, minimize the stress experienced by those with MS. Physical/mental stress is a major trigger for MS flare-ups, so maintaining a positive environment for the sufferer is of utmost importance. Maintaining positivity, happiness, and active support is crucial. Take her out for light nature walks if she enjoys such activity (light exercise is very beneficial), and do your best to reduce her mental/emotional strain. Avoid stupid arguments, deal with the stressful household tasks, and consume a healthy diet. The disease sucks, but through human agency it can be dealt with provided both of you remain strong. I'm an active ADHD fellow too so it can be hard to reconcile the differences between one's lust for novelty and excitement and another's need for the opposite, but it can work. Stay strong my good man.

 

[Pebble Puppy 1]

Best wishes & prayers to You & your Wife. We are pretty much in the same boat. My Wife has been enduring since around 1994. Retired, no insurance& no cure. She has survived by sheer determination. God Bless you both.
Bob

 

[Jeremy S]

ALWAYS get a second opinion when it comes to doctors. If it is something serious, maybe even 3 or 4. Many of them are driven by $$$. Healthy patients don't bring back much repeat business, so keep them unhealthy and you get years worth of paychecks out of them.

My dad has a co-worker, an older guy in his 60s, who developed an open sore on his foot that wouldn't heal. His "trusted" family doctor wanted to immediately rush him in to surgery and amputate his foot. The guy was extremely depressed and was telling my dad and his coworkers about it. They finally convinced him to get a second opinion. Doctor #2 took a quick look at it, referred him to a wound specialist, who in turn gave him a prescription for a special sock that improves circulation in your foot. Less than a week later the sore was healing up and he got to keep his foot. Had he simply taken the word of good ol' family quack, he would have lost his foot or possibly even his leg.

Some doctors like to push pills too. I know of at least 3 cases where the patient died because the doctors gave them a lethal combination of drugs. I once went in for a sprained ankle and they wanted to give me a whole pharmacy of crap.

I truly am sorry to hear about your wife having MS. My Uncle is currently suffering from stage 4 brain cancer, and it is truly hard watching him slowly slip away.

 

[yaledigger]

So sorry to hear of your situation...I will keep you guys in my prayers.

 

[MickeyMaguire]

I am so sorry to hear about this. Prayers for you and your wife... and family. This is the sort of thing that really gets to me. Ours is supposed to be the greatest country on Earth, and when I hear stories like this, I think that we have a long way to go. I would look into the "prescription pot" option and see if there is any comfort in it.